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A project which will develop information and vital support networks for families of children with undiagnosed genetic conditions in six areas of England is one of 36 organisations sharing a total £10,921,517 in good causes grants from the Big Lottery Fund’s Reaching Communities programme today.

The Genetic Alliance UK has been awarded £187,618, which will develop their new project ‘SWAN UK Local Networks’ - providing training for parent and care volunteers to establish support groups to bring families together in a social setting and share experiences. With ‘SWAN’ being an abbreviation of ‘Syndromes Without A Name’, these networks aim to raise awareness of undiagnosed genetic conditions among local service providers and address inequalities in services available for affected families. In two years the project aims to support more than 150 families in need, who may face additional issues such as being out of work due to caring responsibilities, financial issues and poor health due to stress.

Rachel Jeffares from Newcastle, whose three year old son Nate has an undiagnosed condition, said “it means so much” to have SWAN UK for support and advice. Nate is visually impaired, part tube fed, has low muscle tone, is home ventilated at night due to hypo-ventilation and central and obstructive sleep apnoea. When he was born, doctors took his parents aside to ask if they had noticed how different Nate looked, and told them they suspected a very serious genetic syndrome. So far this syndrome remains undiagnosed.

Rachel said: “Nate is a very happy chap. We have gone through a lot with him and he has been resuscitated many times. When he was a baby we went through a prolonged grieving process as he wasn’t expected to live long. I bought a black dress just in case. When you were told your child will die soon, the severe disabilities don’t seem so bad. He is doing much better than anyone expected. It has taken its toll on our family though. I gave up my career as a science teacher, which made a huge dent in our income and we had to make some difficult financial decisions.”

Alastair Kent OBE, Director, Genetic Alliance UK, said: “The SWAN UK Local Networks project will provide intensive, direct support for families of children with undiagnosed genetic conditions within their local community.  It will develop and test a replicable model to provide local support, harnessing the immense expertise and enthusiasm we have found within SWAN UK’s membership.”

Teens and Toddlers Ltd has secured £286,444 to run a project called Building Self-belief which aims to raise the aspirations of teenagers in the London boroughs of Greenwich, Hackney, Lewisham and Tower Hamlets, by pairing them as mentors to children aged two to five who are in need of extra support. The scheme also aims to build the young people’s sense of responsibility so they can make positive decisions about their education, health and future. The mentoring helps the toddlers to improve their social and communication skills and the teenagers themselves can earn an accredited NCFE (QCF) Level 1 qualification in Interpersonal Skills.

Diana Whitmore, CEO and Founder of Teens and Toddlers said: “We could not be more delighted to have been awarded this vital funding, which will help us to reach 576 young people in some of London’s most disadvantaged areas.”

And carers as young as five years old will be supported with a £499,113 grant to help them reach their full social and educational potential. The award to Gateshead Crossroads Caring for Carers will enable the charity to help around 700 young people who provide care and support to someone they live with who are physically or mentally ill, disabled or misuse substances. The organisation will provide crucial intervention to ensure the young person is not taking on a level of care that makes them socially isolated or unable to attend school. It will also work to find ‘hidden’ young carers. Figures released last year from the 2011 Census showed an 83 per cent increase in the number of five to seven-year-olds providing care.

Young Carers Manager Lynn Readman said: “We will be working with families to put together tailor-made plans on how to support them and the young carers. This will involve learning new skills, giving them the opportunity to attend social activities which not only gives them a break from caring, but allows them to have time to play and regain their childhoods.”

With grants from £10,000 upwards, the Reaching Communities programme aims to help those most in need and build stronger communities.

Alison Rowe, Big Lottery Fund spokesperson, said: “Today’s Reaching Communities grants showcase vital projects such as Genetic Alliance UK, which gives families support and the opportunity to connect with other parents in a similarly challenging situation.

“Teen and Toddlers aims to help young people to develop their aspirations and sense of responsibilities in a unique way that school could not, while re-engaging them with education and helping the toddlers simultaneously.

“Gateshead Crossroads will work to ensure that young carers who carry the weight of the world on their shoulders can still enjoy a childhood, by providing the right support.

“Reaching Communities aims to benefit people and communities most in need.”

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Notes to editors

• The Big Lottery Fund, the largest distributor of National Lottery good cause funding, is responsible for giving out 40% of the money raised for good causes by the National Lottery.
• The Fund is committed to bringing real improvements to communities and the lives of people most in need and has been rolling out grants to health, education, environment and charitable causes across the UK. Since its inception in 2004 BIG has awarded close to £6bn.
• The Fund was formally established by Parliament on 1 December 2006.
• In the year ending 31 March 2013, 28% of total National Lottery revenue was returned to the Good Causes.
• Since the National Lottery began in 1994, £31 billion has been raised and more than 400,000 grants awarded across arts, sport, heritage, charities, health, education and the environment.